Wow guys, It’s hard to believe that we are sitting here and it is the last day of the year! I have been doing a lot of looking back this past week over the last year and I am simply amazed at the last 365 days of my life. I know it would be insane to try to do a complete capture of it in one post but I figured it would be fun to do a post where I try to highlight a few moments. Thanks you to all of my readers and subscribers for being along for the ride this year! I look forward to another year of blogging and telling my story next month. Living with chronic illnesses is always unpredictable and I don’t always post as regularly as I want to. Sometimes this is because I’m feeling unwell, other times it is simply because I’m feeling amazing and taking that opportunity to enjoy life while I can. One of my resolutions for 2015 is to try to post a little more frequently though and to stay a little more connected with my readers. Feel free to poke at me if I go missing for too long guys!
2014 In Review It’s a little long, but It’s a list of a whole year!!!!
January (Prior to starting Triumphant Wings)
- Began Plaquenil/Hydroxychloroquine.
- Found current Hematologist, Dr. M.
- Antiphospholipid Syndrome Diagnosis was confirmed.
- Switched PCP’s and became a patient of Dr. C’s. Honestly one of the best decisions I ever made with my healthcare. They take such good care of me at their office.
- INR was raised to 2.5-3.5 by Dr. C & Dr. M.
- Look back at old posts on FB and such I was still pretty emotional over my APS diagnosis. I was still in limbo with part of my diagnosis, and looking for answers and still in a pretty bad flare that I had been in since August 2013.
- Dr. M ruled out adrenal failure and problems with my adrenal glands.
- It snowed, while pretty and the most snow our area had seen in a few years, this came with the price of worsening pain and swelling in my joints. This led me to finally accepting the fact I needed meds to deal with the pain.
- I made that appointment with Dr. C that led to pain relief. I told him my issues concerning my dad and pain medications. I cried my eyes out at that appointment, and he understood, and gave me options for relief. A step in the right direction.
- We were already throwing Lupus around at appointments but the official diagnosis wasn’t in yet.
- I was starting to appreciate small things again, which was the first sign that my stress level was receding finally. I’ll always remember the first couple of sunrises that seemed beautiful again and not foreboding. It is the small things guys, always appreciate the small things.
- Had the last Retinal “TIA” that I have experienced on Feb. 7th after my INR fell to 1.8. This is HUGE being prior to switching to Dr. C’s care, raising my INR and such I was having them every few days. I’m now sitting here a week shy of 11 months of being clotting episode free!!!!! (Aside from some tiny micro clots under my fingernails…which I will more than likely always get from time to time due to having APS and Lupus).
- My friend Jenica gifted me a necklace that has a seahorse (real) in a little glass jar. Symbolic to me because I dreamed of seahorses the entire short pregnancy before I miscarried in May 2013.
- Dr. C decided my INR would be better in the 3-3.5 range. I completely agreed and that is where it has been since. I have felt much better since we have been keeping it in this range. Granted it falls out of this range during flares and for other reasons but if we can keep it in this range as our baseline I feel a lot better. Not every patient with APS benefits from a higher INR range, but I am one patient that does!
- I had my first Malar (butterfly) Rash that was confirmed by a doctor. Well actually two doctors, and two nurse practitioners, included one that is the PA of my Rheumatologist.
- I had my first appointment at “The Office on the 6th Floor” (my Rheumatologist’s office) It was with his PA, she ordered a bunch of tests, and said that she was pretty sure I had Lupus, even if it didn’t show up in my lab work.
- Started cooking more meals at home again, which means I was starting to feel better. I had been on Plaquenil for about 3 months at this point.
- End of March came a pretty significant flare, with one of the worst Malar rashes I have experienced thus far.
- I also started Triumphant Wings on March 31st!!! So a lot of things from this point will be a recap from April through the summer months. I’ll try not to bore you guys too much.
- SLE/Lupus appeared in my medical history for the first time in print. Significant milestone right? You can read about that appointment in the post Printed Words Echo the Loudest. I also quickly got an explanation of Seronegative vs ANA positive. UCTD and my favorite one that is used when describing me by my Rheumatologist so far is ‘not yet diagnostive Lupus’. Basically I have Lupus but my ANA is still negative at this time. My other labs, well they aren’t positive enough. I still meet enough of the other criteria to be diagnosed with SLE though so that is why I am being treated and diagnosed. Confused yet? yea Lupus is not a textbook disease and sometimes it is a tricky one to pin down. Dr. L is concerned that when my ANA does start returning positive things are going to be really bad, so he wanted to get in front of things. I’m blessed with a team of very smart doctors. Blessed I tell you!
- I met Dr. L for the first time in April. He also ordered labs to make sure my body metabolized Imuran properly so we could start me on immunosuppressants.This was the second time SLE was added to my diagnosis the same week. You can read about that on the post Office on the 6th floor.
- A dear friend of mine passed away in April. He was a long time suffer of Chronic Illnesses, and had suffered from a number of complications from birth. He was truly an inspiration and someone who always took time to enjoy life to the fullest.
- I got a chance to say thank you to the PCP that took care of me when I first got sick in 2013 and had been my PCP when I was a child. I had to leave his care due to insurance changes and miscommunications with his nurse led to my abrupt departure from his care instead of the gradual departure change over to Dr. C’s office that I had discussed with him. Nonetheless the change was finalized by early February and I have been well cared for since.
- Remember when Dr. C had the student Dr following him (Appt with Dr. C and the Student Dr. and The Expected-Unexpected Reaction to Vaccines), and I got the Pneumonia & Meningitis vaccines? Remember how I had to go back the next day because they spun me into a crazy flare? Yea I laugh about those two visits now but when they actually happened I was pretty scared.
- I started Imuran/Azathioprine in April, ahead of schedule due to this flare. That also means that the test Dr. L ran returned that I was able to metabolize it, I’m a low metabolizer of it so we have to monitor my dose of it and I’m on my max dose of it, 100mg, that’s it. He is very hesitant to try any higher than that.
- April 27th I began seeing my Therapist. This was a HUGE milestone for me. It has been an amazing step in my self-care and has done wonder in my emotional state of mine. AL has a lot of experience helping clients deal with chronic illnesses and her office did an exceptional job pairing me with her! I started seeing her weekly and now I see her every 2 weeks. I’m not going to mention every appointment with her, but I want to emphasize the importance of her role on my healthcare team. Without her, I do not think I would have made the strides in acceptance and processing the emotional side of being sick. I am forever indebted to her because of this. It is an ongoing and beneficial relationship and I still see her twice a week.
- Warmer temps meant pretty flowers, baby birds, and more time spent walking at parks from my posts on Facebook, instagram and such.
- Lupus Awareness Month! It was the first ever awareness month I took part in. So there were a lot of posts that month to my blog, fb, and instagram that dealt with Lupus facts, and my contributions to raising awareness. It was a lot of fun and I plan on taking part in LAM again in 2015.
- I also hit a point in May where I finally accepted that I had to listen to my body. That I couldn’t just keep pushing through the pain and fatigue. That my body felt that way because it was sending me a message. Since I have started listening to those signals, I recover from flares quicker, I don’t get so sick during flares, and I can generally stave off flares from going full-blown if I start resting and really pay attention to my body.
- I wrote a Poem called Lost which deals with the loss of one’s self when faced with chronic illness. It remains one of my most popular posts to date and One of my favorite poems that I have written to date.
- I broke down and bought the first of my wide-brimmed hats to protect me from the sun.
- Several of my friends, family and even my PCP, as well as myself wore purple on Put on Purple Day this year.
- I had a follow-up visit with Dr. L, who decided that if we wanted to confirm my SLE diagnosis I should see a Dermatologist and have skin biopsies taken.
- I started accepting that one of the biggest issues I have with all of this is the sense of loss of control.
- I remembered with a heavy heart the miscarriage I had the previous year on May 29th. The loss of my child is not something I will ever forget.
- Saw X-men Days of Future Past in theatre. Awesome Movie. Well if you like those types of movies anyways. Which I do!
- I got my first Medical ID bracelet from Endvr, I now have two! I still need to write a post on them. That is on the list to do early in 2015!
- I started exploring how to make Lupus and APS just be a part of who I am, instead of defining who I am. I have been accused several times of allowing them to define me. What people fail to realize is how bad things were in the beginning. They weren’t there for the worst of it, they didn’t experience the things I did. They didn’t spend weeks trying to figure out what was wrong with them, then months trying to figure out treatments that were effective. It’s okay. I forgive those people and their accusations. They also do not understand the process of being diagnosed with a chronic illness and what one goes through when that happens. It’s as individual to a person as the grieving process is. We are respectful of that process and I wish more people were accepting and understand of the process people go through when they first get sick and learn they have a life threatening and life altering disease. Especially two at the same time. It’s damn overwhelming and I think anyone in there right mind would probably check-out for a bit while trying to make sense of it all. I did. I also picked myself back up when I got to a point I could and have begun moving forward. It is a process. It will always be a process. There will be glitches along the way, and I will deal with them as I have to.
- I saw Dr. M, my Hematologist for the last time in 2014. He cleared me and told me that my care was better off with Dr. L and that unless I had another clotting event or surgery he was just a consultant pretty much. Dr. C has called him a few times with questions but I won’t see him again until June 2015. I owe him a big thank you. He got me to my Rheumatologist who has turned out to be a pretty neat guy. We have differences in opinions and ways of doing things but all in all Dr. L is the kind of doctor I need in charge of my autoimmune issues. (He’s got immunities!) My best friend recently made me watch that movie for the first time…. Bonus points if you can tell me the name of it?!?
- I started working with Cognitive Behavioral Therapy and learning my Distorted Cognitions and how to utilize CBT to squash my Anxiety. This has been one of the best approaches to getting my anxiety in check. There are still a few problem areas but CBT has definitely done a world of wonder to getting me to a calmer state of mind.
- Flare in June, INR fell like a brick, dizziness, Prednisone, extra doctors appointments, Dr. C phoned Dr. M, yea that was a crazy flare. I felt like poop. It was all because I spent extra time under the big fall o fire in the sky. Craziness I tell you, pure craziness.
- I saw Dr. B, my ophthalmologist for my check up. My Retinal Vein Occlusion was completely healed. While I will always have a blind spot where the clot starved the retina of blood flow, it was good to hear it had healed and didn’t have to be closely monitored. I had the testing done that needed to be done since I am on Plaquenil as well. All was good. I do not see Dr. B again until July 2015. He is another doctor I owe a world of gratitude to. He set me on the path to a proper diagnosis, recommended Dr. M to me, and vetted Dr. L and assured me that I was in good hands. Not to mention he is a top rated Retinal Specialists. Yep I’m that lucky!
- We saw Transformers in theatre in June!
- Enjoyed my first Appointment free week of the year. We celebrated by living a normal routine, and visiting a lot of parks it seems. We are boring people have I mentioned that?
- Went to the Color Festival. It was hot, there were colors everywhere. It was in the middle of a flippin’ cow pasture. There was NO MEAT at this event.
- I started baking cupcakes and other baked goods like crazy in July.
- Saw Dr. W, my Dermatologist for the first time. He’s like a 12-year-old trapped in an adult’s body. Super high energy and excited about everything! Still waiting for a rash worthy of biopsy though.
- Dr. L had Google Glasses at this appointment. The geeky side in me was so excited. I wanted to put them on! Maybe one appointment I’ll ask!
- Mellow and I celebrated our 5th wedding anniversary. We celebrated with a day trip to the mountains of NC and to a cheese factory that we like to visit.
- Was sick with Bronchitis for half the month. Recovery for the second half of the month. INR was wonky most of the month. Lots of Appts at Dr. C’s office because of this.
- Robin Williams’ suicide happened during this time. Being sick and ordered to rest as much as possible in the wake of this event meant I had a lot of time to think back through my Dad’s death all over again and a lot of time to mourn the loss of one of my favorite actors.
- Saw Guardians of the Galaxy and Into the storm. Guardians of the Galaxy was awesome. Into the Storm was an extremely stressful and intense movie. Much more so than we were prepared for going in.
- Made a new batch of laundry detergent. (8/25) Last batch lasted 2 years! Woohoo!
- I picked up my crochet hooks and began crocheting again. Another huge milestone. My fingers are working much better again! A lot less swollen and can function properly, with a lot less pain. It makes hobbies such as crocheting much more enjoyable! This is one of the reasons I disappeared toward the end of the year. I was busy crocheting Christmas Presents!
- I got my Flu Shot for the year! I was one of the first people to get it when it came available at my PCP’s office because I am on immunosuppressive therapy and Plaquenil. It was the first Flu Shot I have gotten since I worked in Early Childhood Education. I am required to get one every year now.
- I hit the 1 year mark of my Branch Retinal Vein Occlusion, Dr. L becoming my doctor, and of starting Warfarin as my anticoagulant. Milestone Jackpot!
- I saw Dr. L for the last time in 2014. He ran labs. My Kidney Function Tests were completely normal when Dr. L tested them! First time since they started testing abnormal in August 2013. It was such good news to get, I felt I needed to throw a party to celebrate. I did not however, throw a party. I see Dr. L a few days after my 31st birthday in January 2015.
- Doug brought home apples from New York. We made a lot of things from said apples. Apple cobblers, Apple pie. We even made several quarts of Applesauce.
- Several crocheting projects were started and completed during the month of October.
- Several baking projects were also completed and consumed.
- I dyed my hair a color called Chocolate Cherry. It is a deep burgundy brown color. A wonderful fall/winter color.
- More crocheting and baking projects.
- Flare. Prednisone. Extra trips to Dr. C’s office.
- Thanksgiving was a household event this year. Hopefully next year I will be fully back up to speed and able to invite people over like we use to. If not I’m not going to beat myself up over it like I did last year. I’m giving myself space to just be, and to be where I need to be at the given points in time.
- Mellow’s Birthday, Celebrated with cupcakes, time with friends, and gift giving.
- I made Dr. C’s office cupcakes to say thank you for all they have done for me this past year the week of thanksgiving. I had an INR appointment so it was convenient. A wise old man (my grandpa) once told me to always take care of those that take care of you, and that little acts of kindness and gratitude go a long ways in this world. So I always try my best to show those that take care of me how much they mean to me. Especially when they go above and beyond time and time again. I didn’t feel that a simple Thank you was enough this year, so they got super special Pumpkin Cupcakes.
- Took time to remember the passing of my dad, he has been gone 3 years now.
- Crocheted like a mad woman up until the last-minute possible to get gifts finished!
- Put up a tiny Christmas tree this year because we weren’t sure if Timber (one of our dogs) would eat our other tree and the ornaments.
- Baked Eggnog Cupcakes for AL’s office to say thank you for all they have done for me. I also gave her a scarf for Christmas.
- Took Dr. C and Cindy scarves that I had crocheted them to my Dec. follow-appointment on 12/23.
- Get to cut my Blood pressure medicine in half for the next month to see if we can start considering decreasing the dose officially or stopping it all together. So far my BP is staying really low. Like clinically low at times. I know this because my grandparents bought me a blood pressure monitor for christmas so I’ve been taking my BP periodically throughout the day every day since Christmas.
- Spent Christmas Day with my family back home. Loved seeing everyone. Then we came back home and got back to the normal life the next day.
So that’s it. That’s the Snapshot view of 2014. Sorry it was long so I think it is acceptable. I will try my best in the next week or so to post a list of my resolutions, goals, and thoughts for 2015.